This post is for parents of children or adults with MECP2 Duplication Syndrome but it is also for all parents of children or adults with intensive needs. It is about how having a child with intensive needs changes our lives so fundamentally… about how challenging and sometimes painful it makes our lives…. but also how it enriches our lives and makes our lives better in some ways.
The photos that accompany this post show some of the books that I’ve collected that say something about the experience of parenting a child with a disability. Doctors, sociologists, special educators, and others have all written a tremendous amount about parenting children with special needs. So, you may wonder, hasn’t it all be said? And, why on earth do I think that I have something to add?
Well, it is partly because it bothers me that parents own accounts of their experiences seem to conflict with how researchers and professionals describe these experiences. It is also because I believe that many of my esteemed academic colleagues have gotten it wrong, or more accurately have only captured certain aspects of the parenting experience and missed some other vital pieces.
Here are some things that I think are wrong or at least misleading about much of the existing research and professional opinion.
1. Researchers have attempted to generalize about parent experience, suggesting that all or practically all parents react in much the same way. I believe that different parents have very different reactions.
2. Maybe one of the most obvious things is that parents as a group are either perfectly wonderful or totally terrible. Some are actually terrible, quite a few are wonderful, most of us are just doing the best we can.
3. Researchers have suggested that parents of children with disabilities as a group experience every high levels of stress, anxiety, and depression that are far beyond those experienced by other parents. The actual data do reveal group differences but they are relatively modest. Many parents of children with disabilities, including many whose children have intensive needs, do not exhibit elevated levels of anxiety, stress, or depression. Furthermore, many parents of children without disabilities do exhibit elevated anxiety, stress, or depression. The essential lesson is that very high levels of stress and and anxiety are NOT inevitable outcomes.
3. When elevated levels of anxiety, stress, or depression is found among parents of children with disabilities, researchers and professionals attribute this to the experience of parenting a child with a disability. While this may be true sometimes, there are other potential explanations that can explain part of the association. For example, this research assumes that marital conflict results from children’s behaviour problems, but it also could be true that children’s behaviour problems result from marital conflict. At least on large-scale longitudinal study found that depression was more prevalent among mothers of children with developmental disabilities than mothers of other children, but this elevated incidence of depression was present before their children with disabilities with born. If the elevated depression was present before the children were born or before disabilities were known, it is hard to imagine how it could be an outcome of the parents future experience.
Having pointed these things out, I need to say that I am not denying that stress, anxiety, and depression exist in families of children with disabilities. I can personally attest to the fact that many aspects of my experience as a parent of child (and now a young man) with intensive needs is extremely stressful, and I know other parents do, too. I AM saying, however, that these aspects of parenting have been overemphasized by researchers and professionals.
More importantly, the positive side of parenting children with intensive needs has been mostly ignored. While parenting a child with intensive needs is challenging, most parents also report that it is rewarding and has had some positive effects on their lives.
Traditional approaches to helping parents and families have focused on trying to reduce the negatives (e.g., demands, stress, etc., rather than enhancing the positives. They try to make it less bad rather than more good. At first glance, less bad and more good may seem like the same thing, but there are important differences. This example may help illustrate the difference:
Among many other chores, a parent of a child with severe disabilities and intensive needs may change 10 of 20,000 or more dirty diapers over a period of years. The same parent, however, may feel that the relationship with her child is highly rewarding and that makes changing diapers and lots of other chores worthwhile. So one kind of support seeks to make things less bad (in this case it might mean someone else changing a few of those diapers), but another kind might be to support and enrich the rewarding relationship (making the relationship more good).
Of course, I am not trying to suggest that attempts to reduce demands and stress on families is bad. I think it is valuable and families deserve all the help that they can get. I am saying, we need to consider the other side of equation… helping families to maximize the joy of parenting.
One way that parents of children with intensive needs differ is by their relative reliance on two types of adaptation. Coping is an approach that attempts to maintain life as much as possible as before. The parent does not change the way that she or he thinks or behaves, but attempts to assimilate the challenges of parenting a child with intensive needs into his or her existing life. Transformation is very different. This approach means that parents make significantly change the way they think about the world and the way they behave.
One of these methods is not always better than the other, but successful coping becomes more difficult when a child has intensive needs. Trying to go on with life as if nothing has changed in the face of major challenges frequently is the source of significant stress. Transformation can reduce stress and enhance the rewards of parenting a child with severe disabilities and intensive needs.
Not everyone loves Neil Young’s voice, but if you listen to the lyrics, you can hear about how having a child with a disability transformed his life.